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recurrent psa 0.2

User
Posted 09 Jun 2022 at 09:24

hi,5 years after prostatectomy my psa has reached the dreaded 0.2.  up from 0.16, 3 months ago.i have a telephone consultation with my surgeon on 16/6,he has previously advised me that i can either begin radiotherapy ,now not knowing where source of rising psa occurs or wait until my psa has reached 0.4 and have a pmsa pet scan to locate the cancer and then have radiotherapy. does anybody have any experience of this hobson choice?,is there any scientific papers i could read ? what would treatment actually entail? how severe are the side effects?. what questions should i ask consultant?.im a bit stumped,any help would be greatly appreciated

.thank you joe

User
Posted 20 Dec 2022 at 16:10
John's is consistently higher in August / Sept than the rest of the year - we assume the rise is caused by 6 weeks in France each summer cycling, drinking red wine and eating cheese. Numbers are very low though ... often <0.1 the rest of the year and then 0.1 or 0.11 in September
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Jun 2022 at 11:03

Joe, things have moved on in the last few years and scans are getting better at lower PSA levels.  My request for a PSMA pet scan was declined before salvage RT. Despite having SRT my cancer has come back. 5 years on from SRT and I am having a PSMA pet scan next week.

Thanks Chris 

User
Posted 10 Jun 2022 at 12:55
Your PSA is behaving typically for cancer cells left in the prostate bed - a period of undetectable PSA followed by a steady but fairly slow rise. Men with mets tend to either a) have detectable PSA immediately post-op or b) see a sharp rise within the first couple of years. On balance of probabilities (and based on years & years of data), salvage RT is likely to be successful for you.

However, you mention that it is the urologist who is giving you this advice? Generally speaking, this is not the area of expertise of a surgeon and you should really have been referred to an oncologist when your PSA reached 0.16. The oncologist is best placed to advise you on next steps.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jun 2022 at 21:30
🤣🚢🐟
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jun 2022 at 20:01
good luck peter,my gleason is 4+4 also,it was 5 years before i reached 0.2,hope your psa flatlines.joe
User
Posted 17 Jun 2022 at 22:44

Not sure how well respected this guy is but the following elaborates on the problems of recurrence. I posted earlier in this thread and my oncologists educated guess based on data didn't work out for me.

https://youtu.be/Q2joD360_pI

Thanks Chris 

 

User
Posted 21 Jan 2025 at 02:16

Half of my career was as a chemical analyst, and my training included how to consider variability when interpreting test results. For all the discussions on PSA I have not seen any information on how variable the nature of the test is.

Although results might be reported to three decimal places this is an indication of how sensitive the test is but does not indicate how much fluctuation the nature of the test might introduce.

This variation is statistically determined by doing multiple tests on the same sample, then working out the statistical standard deviation of the results. Normally we report the results to the 3 standard deviation level, so a result would formally look like:
0.245 +/- 0.x at the 99.7 confidence level, where x is the variability caused by the test and which we do not know. If it was something like 0.05 then we would say we are 99.7% confident that the result would lie somewhere between 0.195 and 0.295 ug/l .

So when we compare two results without knowing how variable the test is you should be cautious about drawing too many conclusions especially for results close to the detection level. This concern can be ignored though for higher levels of PSA and for sets of results that are hugely different in value.

This situation becomes even more complex because (as far as I know) we do not have a good handle on how much natural variation of PSA level there is with an individual after radical prostatectomy caused by natural/environmental factors.

If you want more of an eye-opener, have a look at lab to lab variations reported in Australia by this article:

https://www1.racgp.org.au/newsgp/clinical/psa-testing-dilemma-a-pathologist-s-perspective

 

 

Edited by member 21 Jan 2025 at 21:51  | Reason: Not specified

User
Posted 30 May 2025 at 21:52

Hi, I had SRT without HT and didn't notice any real fatigue. Although there was just the driving, hanging around the treatment centre and water intake to contend with.

With a long drive home it's handy scouting out likely toilet stops such as supermarkets, pubs etc. I think it's also worth taking spare pants and trousers in the car in the unlikely event of a mishap.

I developed more of an urge to pee as my treatment progressed, and I learned not to trust a fart.

Good luck, 

Kev.

User
Posted 30 May 2025 at 22:05

W, quite a few guys have said as time goes on, don't trust a fart, I did suffer with mucus farts. The hot weather can affect how water gets into the bladder but I think the modern RT machines scan a lot better than when I had my treatment. Find the nearest toilet to your treatment room and find a back up toilet just in case. The staff said I could use a urine bottle in the treatment room if really needed. I took a waterproof cover for the car journey and  a urine bottle and towel just in case, don't think I needed them. I did have 33 sessions, with 20 sessions the effects may be slower to happen. Also know where toilets are in the journey to and from the hospital.

I always checked that the appointment was on time before drinking the required amount of water. I drank water on the way to hospital, if the appointment was on time I emptied the bladder then drank the required amount of water.

Thanks Chris 

 

User
Posted 31 May 2025 at 09:07

I had salvage RT (33 sessions) last year (with HT). No problems at all. My nurse said it was probably because I was consistently  well hydrated. (2 litres a day, every day). I filled a pop bottle with squash in the morning and didn't go to bed until it was finished, a nurse advised me that squash was better than water because the body has to process squash. Very easy to monitor intake that way. I also had a 2 hour round trip and took spare pants and trousers and a couple of pads but never needed them. 

Good luck.

User
Posted 27 Jun 2025 at 22:37
Well done, good luck for the tests in September, hope all the side effects have cleared up by then..
User
Posted 28 Jun 2025 at 09:20

Thank you kev, good to know side effects may go quickly, then back to olde psa anxiety,feel very lucky that 8 years after surgery I'm still fighting and on top of cancer. Best of luck to you. 

User
Posted 29 Jun 2025 at 09:13
Don't know if I would be able to do it but after 10 years of PSA "anxiety" I think I may just not bother with PSA testing if/when I have salvage radio therapy. Just wait for symptoms and treat it then.

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User
Posted 09 Jun 2022 at 11:03

Joe, things have moved on in the last few years and scans are getting better at lower PSA levels.  My request for a PSMA pet scan was declined before salvage RT. Despite having SRT my cancer has come back. 5 years on from SRT and I am having a PSMA pet scan next week.

Thanks Chris 

User
Posted 10 Jun 2022 at 10:18

Hi Joe,

I'm in a similar situation to you, although I'm two and a half years post op and my PSA has not reached 0.2 yet, both my urologist and oncologist are in agreement that early salvage RT to the prostate bed is the best way forward (or I could wait until the magic 0.2 and have some scans).

Treatment for me entails 20 sessions spread over 4 weeks (5 days x 4) so I get weekends off. My treatment is at another hospital some 45+ minutes drive away so travel is something to consider. 

As for symptoms (going by my paperwork) the main ones being tiredness, urinary frequency, bowel frequency and loose stools apparently. I had to chuckle that there is a 10-50% chance of hair loss in the treatment area. Other symptoms such as infertility and changes in ejaculate are listed, but that happened with RALP.

Hopefully, others who have had RT will see this and add any symptoms. 

Maybe ask what are the pros and cons of radiotherapy now against waiting for scans. Maybe your original diagnosis (T2 or T3?) and post op histology would have a bearing on the decision?

Either way, good luck. 

Kev.

Edited by member 10 Jun 2022 at 10:32  | Reason: Typo

User
Posted 10 Jun 2022 at 11:29
thank you ever so much kev,i wish you well,this is ever so helpful,and will give me confidence when i talk to my consultant,hope you have a great weekend.joe
User
Posted 10 Jun 2022 at 12:55
Your PSA is behaving typically for cancer cells left in the prostate bed - a period of undetectable PSA followed by a steady but fairly slow rise. Men with mets tend to either a) have detectable PSA immediately post-op or b) see a sharp rise within the first couple of years. On balance of probabilities (and based on years & years of data), salvage RT is likely to be successful for you.

However, you mention that it is the urologist who is giving you this advice? Generally speaking, this is not the area of expertise of a surgeon and you should really have been referred to an oncologist when your PSA reached 0.16. The oncologist is best placed to advise you on next steps.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jun 2022 at 16:56
thank you lyn this is very informative and reassuring,i may well be referred to oncologist on thursday,,i shall as always attempt to dance into my future, hope you have a lovely weekend.
User
Posted 10 Jun 2022 at 20:04

Joe, my cancer 'came back' a year after my prostatectomy.  To cut my story short, I had a psma scan which completely changed the salvage RT treatment field.  I really am a firm advocate of a psma ga68 scan.  It helps take the guesswork out of the area to treat.  I'd also insist on some form of hormone treatment.  I had 18 months of Bicalutimide. 

 

Almost 4 years post SRT, my psa is >0.006.  I've been discharged from oncology.  You have every reason to hope. I was G 4+5 and I'm in a really good place.

Personally, I don't think you should wait until 0.4 for a psma scan but others here who understand these things better may have a more accurate view on that

User
Posted 10 Jun 2022 at 20:16
thank you ulsterman,its kind of you to share your experiences,i now feel better briefed for my consultation,enjoy your good place hope you have a great weekend
User
Posted 10 Jun 2022 at 22:26

Hi,  From what I read there is a chance of finding something with a psma test at 0.2.    At 0.4 there is a better chance but waiting that long is more risky.   If the expected cost isn't too much it might be worth finding about places to have a private scan and if they don't refer you quickly to oncology say you're looking at private scans and will they use it if you do.  I'm not sure of the mechanics of getting a private scan but would think it worth getting your hospitals agreement.   Probably the surgeon isn't the right person to answer this. 

On the other hand you might think it worth having RT without a scan although the latest thinking is that it can refine how its targeted.   All the best.

Edited by member 10 Jun 2022 at 22:33  | Reason: Not specified

User
Posted 11 Jun 2022 at 00:01

I think the advice is getting ahead of the situation. It seems it is the urologist who is saying this stuff. Let's see what the onco says before anyone starts recommending private scans! The onco might take a different view to the urologist and will be in a far better position to advise on that CCG's position on PSMA or PET scan access?

Plus - a big deal is being made about PSMA on the forum recently which might lead some newbies to believe it is the only thing worth having but a) PSMA is not always available and not all cancers show up b) there are also other tracers which are highly effective at low PSA readings, such as FACBC or even choline might pick something up. 

Edited by member 11 Jun 2022 at 00:59  | Reason: Typo

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jun 2022 at 07:35
thank you for your wisdom,i guess i have to wait and see what happens with the consultation on thursday,.ive gathered i should be hoping to be referred to oncologist,i;ll update then,thank you so much,it means a lot to have this space to ponder in,

.in the meantime its a canny weather forecast and i hope you all enjoy a relaxing weekend

,joe

User
Posted 11 Jun 2022 at 11:50
Do more than hope... just say that as you clearly have a recurrence you want to be referred to oncology! In most areas, you would have been referred already so not sure why your urologist is delaying.

There is a possibility that the surgeon is also the oncologist but it is very rare in the UK.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jun 2022 at 12:32

Joe, there was a lot of talk about PSMA scans five years ago when I had a recurrence after surgery. I did have positive margins and extraprostatic extension so always a possibility the cells were local. My oncologist said salvage RT to the prostate bed was " a very educated guess based on years of experience"  As I previously mentioned it didn't work for me and I was unfortunately in the 5 percent of men who suffer with bladder damage. 

Barry sent me a link to a you tube video about  treatment for PCa, attached is a link to another part of the youtube video which us about recurrence, it may lead you to ask a few more questions. Might be worth calling the nurses on this site, the number is at the top.

https://youtu.be/Q2joD360_pI

My scan next week is with the NHS, when I chased up the appointment, I asked using my private health insurance and was told it would not get me a quicker appointment. My appointment is at 17.00, they are obviously putting in some extra hours in to reduce the backlog.

Thanks Chris 

 

User
Posted 11 Jun 2022 at 19:12
OMG that video scared the proverbial out of me!! Single recurrence the whole length of his penis! Spread to the belly button from the robot! OMG!!
User
Posted 11 Jun 2022 at 19:29

Lyn's comment reminds me there are two quotes I found useful.  One is 'don't get ahead of yourself' from a PCUK nurse several years ago.  More recently by a dermatologist 'we are where we are'.  They sort of get you off your horse galloping into the desert.

 

User
Posted 11 Jun 2022 at 19:40

Joe, re-read Lyn's posts.  Full of great wisdom.  You need an Oncologist now.  Don't take no for an answer.  

User
Posted 11 Jun 2022 at 23:19
Wellyeknaa, I can't really advise since I am in the middle of the process myself. But you might feel it helpful to know what it is like from someone slightly ahead.

I had surgery about 6 years ago, but after a couple of years PSA started being a little higher than "undetectable". For some reason it seemed to stall a while in the teens but last year clearly breached 0.2 and I was referred to an oncologist.

The story was that I was in a good position, in that with PSA less than 0.5 and doubling time more than six months salvage RT was likely to be very effective. But also that scans often gave little useful information when PSA was less than 0.5, and that waiting till they might be informative meant there would be more cancer and thus RT needed to work somewhat better. So better to get treated.

So at the moment I am on HT, and PSA has now dropped to undetectable which is good. Unfortunately I am still waiting for RT, partly because they wanted my colon checking (and when that happened a polyp was removed from my rectum) but also because post-Covid both GPs and oncologists have been catching up with a backlog of cases but the availability of RT slots remains fixed. I am just hoping they can schedule it so I don't need yet another HT injection, I am getting a bit fed up of those.

User
Posted 12 Jun 2022 at 14:20
thank you all for your advice,ive taken it all on board and i will use it in my consultation on thursday. im leaning towards being scanned before having radiotherapy,but im sure i,ll be able to discuss all options with an oncologist..does anybody have any views on the sloan kettering cancer nomogram,that seems to indicate hormone treatment plus radiotherapy is very advantageous.thanks again,i wish all the very best of sundays and beyond.joe
User
Posted 12 Jun 2022 at 15:44
All the research suggests that salvage RT is more effective if given with HT although I have noticed on here more recently that some oncologists are telling men they don't need the HT. I have my doubts - if you are going to have one more bash at achieving remission, why not give it the best chance of working? Having said that, my husband hated the hormones and stopped early so only had 6 months; that was nearly 10 years ago so doesn't seem to have caused a major problem.

The MSK nomograms are the most reliable, as they are based on a huge data set. However, outcomes for men in the UK are slightly worse than in the US, and outcomes for men in the North are worse than for men in London / South East so most UK hospitals now have their own version of the MSK nomogram with locally adjusted algorithms. It is still useful to check the relevant MSK but then adjust your expectations down a little bit.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jun 2022 at 16:24
thank you lyn,im a geordie my expectations have never been high,but thanks to you and other contributors i feel much more in control of the process and have a clearer idea of the route forward.
 
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